Archive for April 2016

"Dr. 2"'s plan won out. In an effort to reassure me, I was told that they'd tested the ambulatory system on a couple of suitable Haematology patients last year, and that I was the first Haemo patient to have it "now that the wrinkles had been ironed out"...

The chemo for my third cycle was administered at home. High-dose Cytarabine given by pre-filled and pre-programmed portable CADD pump over 6 days as an ambulatory patient. 6 doses, 4 hours each.

Well, it didn't take long for me to find more wrinkles... plumbing errors, filter problems, valve problems, even simple things like being given a shoulder-bag with the strap sewn on at the base, not the top. And no, the thing can't be put into the bag the other way up - the display wouldn't be visible, and the light-sensitive chemo in the reservoir would be "exposed" and thus ruined. The instructions, however, do say that it's important to keep the pump upright. Doh!

Anyway, all that finished on Saturday. I'm currently at home, blood-counts have crashed as planned, now we're just waiting for them to recover.

Hopefully this time it won't take a whopping 64 days for them to do so.

Out-Patient appointments... just like a box of chocolates, you never know what you're gonna get. More to the point, I never know which of the triumvirate of Haematology Consultants I'm gonna get.

They are, of course, all equal. But one of them is so obviously more equal than the other two...

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In the following, the names have been changed to protect the identities of some of the main players.

Three weeks ago "Dr. 1" told me that the poison of choice for my third cycle of chemo would be Cytarabine. Two days on, one day off, then two more days on. A total of five days. I would be given that as an in-patient due to the risks associated with the high doses/concentrations involved. We could start as soon as my blood-counts were sufficiently good and stable. I like "Dr. 1" because he explains and justifies what he is doing.

A week later and "Dr. 2" was telling me a different story. My third cycle of chemo would be self-administered at home. No idea which chemo drug(s) or how long they would be given for. We would start as soon as my blood-counts were sufficiently good and stable.

Last week "Dr. 1" was sticking to his previous script - Cytarabine over 5 days as an in-patient. My blood-counts were good and stable but the start of Cycle 3 would have to be delayed until some other issues (flu on the ward, bleeding arse, bleeding gums) had been brought under control. I told "Dr. 1" that "Dr. 2" had told me a different story, he said that his plan was the one that would be best.

On Thursday this week "Dr. 2" was sticking to her previous script. My third cycle of chemo would be self-administered at home. No idea which chemo drugs but they would be given by portable pump over 6 days. We would start on Monday regardless of the other issues. She trashed the plan set out by "Dr. 1". She didn't discuss the results of the testing of the bone-marrow sample that they took from me on Tuesday. Basically, I was lectured and then dismissed, the next patient was waiting and the docs were running late.

Me and Chris went home with very little information but with plenty to discuss. WTF, I'd just been steam-rollered! Why were the consultants not in agreement? Which plan was best? Just who was in charge?

On Friday I turned up unannounced and started to ruffle a few folks' feathers. I wanted answers, facts, explanations. It took a few hours and I had to threaten to kick up a bit of a stink, but eventually the third member of the triumvirate (we'll call her "Dr. 3"), supported by a concerned and considerate colleague, was delegated to placate me. "Dr. 2" was on the wards only a few yards away and was aware of the situation but seemingly wasn't "equal" to the challenge of dealing with it.

And it all got sorted out really quickly and easily... I told "Dr. 3" my concerns, she gave me the missing facts, we discussed the reasoning behind the different plans. All stuff that could have been sorted in five minutes during the out-patient consultation the day before, but it cost me a ruined Friday and it cost them precious NHS resources. Hopefully they will learn from this "opportunity".

The result is that we now all know what the plan is, and why.

And from now on they'll all remember that it's ME who is in charge.

We start Cycle 3 on Monday. It's not standard treatment so I bet it'll be a hoot!

A different postman was trying to deposit another ream of junk mail into our hallway today. While inadvertently intentionally cutting off his access to our letterbox I chatted with him for a while. According to him, the Royal Mail or the Post Office (he wasn't sure which) gets 5 pence per item of junk mail delivered. That's not a bad crack, but the poor old postie gets none of it, he just gets a hernia and hassle from those members of the public who don't want their houses filled waist-high with unwanted tosh.

And the Sorting Office folk are now playing dirty, they are intentionally placing the bona fide mail between (and sometimes even within) items of junk mail, so that unwitting folk who just dump/bin/burn/shred (or, as we do, re-post in a variety of post-boxes) their share of junk risk losing the desirable mail for which they have waited so long.

I offered him a deal. For each item of junk mail destined for our house I would give him, not the Royal Mail or the Post Office, the going-rate of five pence to either deliver it elsewhere or otherwise dispose of it.

He says he's going to think about it.

The flip-side of the deal is that if the junk mail doesn't stop soon I will be raising Mary-Hell at the Sorting Office because we have been registered with the Door-to-Door Opt-Out Scheme and with the MPS scheme for so long that I had hair when I first registered.

The posties do know about those registrations, of course. Mainly because during the most-recent festive season our front door was decorated not with boughs of holly but with this polite reminder:

"Be careful, don't overdo it, know your limits, if you do too much then rest up and recover. Phone us if you feel ill."

That's the universal advice given when they send patients home to continue their inter-chemo recovery away from all of those ill people in hospital.

The trouble is, some of us don't feel like we're doing anything of worth unless we are pushing our limits or ourselves. How do we know when to rest up?

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Old Jack may well be pushing his limits (and his luck) by asking his missus to pass the TV remote control to him for the umpteenth time this afternoon, so for his own safety he should probably back off a bit and have a snooze. Or maybe he should simply use a laggy-band to fix the thing to his person so that he doesn't drop it every five minutes.

But we're not all as doddery as Old Jack. We don't all need Zimmer-frames to get to the shitter, we don't all need "Care in the Community" rob-dogs to dispense our pills while eyeing up the family silver display in the corner-cabinet.

Today I've dug a fair wedge of garden, tidied up one of the sheds and moved eleven 3x2 slabs (yeah, the thick council ones). Not wanting to be caught standing around doing nothing, I then laid five of them, sorted out the mains electrics in the sheds and in the greenhouse, entertained three sets of neighbours, shot some wood-pigeons and then made plans to walk unaided to the shops, and hopefully back again, without having a bob-a-job boy-scout dangling from my arm to help me to cross the road, in order to purchase some milk (so that I can entertain more neighbours tomorrow). And I still found the time and the energy to castigate the postman for delivering yet another tranche of junk-mail.

And I've yet to find something to do this evening.

Tomorrow is already planned... try to finish building the frame & wire fruit-cage during the day, and, without a safety-net or a parachute, walk to and from the pub in the evening with the intention of imbibing more than a little liquid propellant.

That's not really overdoing it, is it?

Or should I look forward to another bollocking during this Thursday's out-patient appointment?

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